A Road Less Travelled – Living with Neuroendocrine Cancer

The First Anniversary of my Diagnosis

Hard to believe where the time has gone, but on the 22nd June 2015 we received my diagnosis. That is definitely one day I will never forget, the feelings of shock and disbelief, but also the relief that there was a valid reason for the way I have felt for years. It wasn’t all in my head, I wasn’t a hypochondriac, I really am ill!

So I thought I would mark this anniversary with a round up of my year:

June 2015:- 12th June I had a biopsy and on the 22nd I learnt what was really going on. Diagnosis day also marked the start of my daughters maternity leave, not the best news to be sharing at such a joyous time. Needless to say the last couple of weeks of June were spent getting over the shock and letting family and close friends know, a well as some work colleagues. Gathering as much information as I can, and injecting myself 3 times a day with small doses of the drug I would probably be for the rest of my life to make sure I could tolerate it.

July:- Still getting my head around the cancer thing, realising just how rare and confusing this disease was, making new friends both on the Net Patient foundation site, blog sites, and facebook. Writing my own first ever blog to let everybody else know what was going on with me, which will hopefully also help to raise awareness. Baby knitting was also in full swing.

August:- Our lives changed again, but time in a wonderful way as our new grandson was born, and we were caught hook line and sinker. He arrived just as we were going away so we had to sneak into the hospital in the early hours to introduce ourselves before we went. It was our annual Snowden weekend too, which will be remembered as the one of the magical mystery tour. I also re-learnt how to make yogurt, and discovered how easy it is to make granola.

September:- Getting used to the side effects of my monthly injection I tried going back to work on a staggered return, and we booked a last minute holiday to Cornwall, Penzance. I quickly realised that going back to work was not going to be that straightforward, I was not the one in control here and there was still a lot to get used to, so I decided to follow my doctors advice and take the rest of the year off to acclimatise to the new me. We had a great time in Cornwall though, the weather was kind and there were lots of things to do, it was good to do normal things.

October:- There was lots of foraging going on, food was definitely the theme this month. There were bumper crops of blackberries, sloes, and rosehips along the canal, which were turned into hedgerow jam, sloe gin and blackberry Kirsh. We had a bumper crop of chillies too, some of which were combined with the home grown tomatoes to make chutney with a kick, and the jalapeños were chopped and bottled.

November:- We celebrated our wedding anniversary by visiting the Christmas market in Birmingham, usually we go away, but decided to keep it simple this year. Unfortunately though it, it also marked the day of the terrible terrorist attacks in Paris. We also had a wedding and a funeral.

December:- Of course this month was all about Christmas and New Year, I had my first Liver MRI since June, but results would not be ready until January so I decided not to dwell on in. I was also really exited as our daughter Ruth & her husband Jordan were coming over from Canada to spend Christmas with us, and to meet their new nephew. It was also our turn to host the New Years eve party, so it was a pretty full-on and tiring month. I also made one of the hardest decision’s of my life, I would not be returning to work in the New Year. I loved what I do, and worked in a great team, I felt very sad even though I knew it was the right thing to do for me. Although I do visit on a regular basis, they can’t getting rid of me that easily!!

January 2016:- We started the New Year off doing a sponsored walk with a group of family and friends to raise funds for the Net Patient Foundation. It was a bit wet to say the least, but well worth it as due to everybody’s generosity we raised nearly three times our target. This was followed by a quick trip to Edinburgh with my daughter Ruth for some girl time before she went back to Canada. Then I was brought back down to earth with a bump when we got my MRI results, as there was evidence of some progression, to say I was a bit down was an undertatement. This did result though in my referral to the NET specialist centre at the Christie Hospital in Manchester. I also celebrated my 54th birthday with a lovely meal with friends and family, which helped to take my mind off things.

February:- This month marked my first visit to the Christie, and even though I had received excellent care at Stoke hospital, I felt that the referral was definitely the best deicision. These people know their stuff. My monthly medication dose was doubled, which was a bit of a shock to the system, and I was sent for a CT to get a new baseline, all my previous results were also to be re-checked.

March:- The CT results were good, showing no progression in my guts, although I was put onto Creon due to malabsorbtion issues, it should help with the bloating, cramps and urgent toilet issues. As there were still further tests to be done over the next couple of months, as well as trying to get some of my symptom’s under control, it was with great sadness that we decided to put off our family trip to Canada until next year.

April:- The Creon was helping, however the habit was hard to get established, additionally I was prescribed lanzaprezol to help the Creon do its job. I also embarked on some free on-line courses via the open university. The best of which was the ‘Anatomy of the Abdomen’, which has helped to give me a better understanding of my insides and how it all works.

May:- This month we had a meeting with the surgeon, he showed us my CT scans, and I was able to see my tumours, which as well as being very interesting made it all the more real. He also re-assured me that no intervention was needed at this time, and would not be done unless absolutely necessary. The nature of my beasts means they are not easy or safe to get to, and as I already knew, taking them out is not a cure. I also attended the NET Patient Conference in Birmingham, which was well worth the visit.

June:- I had my liver MRI, at the beginning of the month and we booked a sunshine holiday. We had agreed that no matter what the results were we were going on holiday. Thankfully it was a positive result, and I was given the green light to go and have a good time.

Well that has been my year, looking back it has been quite a ride. I have had my ups and downs and will continue to do so, I have also learnt that the complexities of this cancer means that no two people are ever exactly the same, a bit like a finger print we are all unique in our own way.

So I would like to finish this blog by saying THANK YOU to all of you for your love, support and generosity, you help to keep me going. Especially my wonderful husband Ade, who is my rock, my cushion and the sponge that soaks up my tears when it all gets to much.

Wow, that was so well written. 🙂 I know it was a recap of the anniversary of your diagnosis but it was really so positive. 🙂 It made me happy to see how well you are doing & I am glad your husband is there for you! 🙂 Hey, I’m getting about 1 pint of blueberries ever 2 or 3 days off of my bushes. 🙂 I will keep you posted if we make anything. Right now, we are eating them too fast!!! 🙂 Keep fighting!!! 😀

Your blog was very interesting as my husband seems to be in the same situation as you but I do worry when we are due to go to see consultant for results, we are due to go in July. We must all keep together and help one another